Tabitha’s Story

I appeal to your heart and your generous spirit to help this beautiful young girl.

I am sharing a picture of her prior to this horrible disease.

Imagine pain so severe the breeze of someone walking by causing excruciating pain so intense it’s as if someone just lit you on fire, the vibration of a vacuum cleaner shooting through you like knives, or muscle spasms so strong your body shakes uncontrollably. Imagine not being able to roll yourself over or sit up without help, not being able to swallow, waking up blind, or trying not to breathe because it causes too much pain. Being stuck in bed, feeling so isolated and alone, while life passes by and everyone you once knew moving with it, leaving you behind.

This is the life Tabitha has been living for the past 11 years due to Reflex Sympathetic Dystrophy(RSD). Tabitha leaves quite an impression on everyone she meets. Her personality and positive attitude has helped her stay strong through her brave battle. RSD has stolen Tabitha’s life, but there is hope for some relief with a ketamine-induced coma, an experimental treatment being done in Germany and Mexico.
Never in a million years did Tabitha’s mother think that she would have to remind her daughter to breathe in order for her to get through the endless days and nights of agonizing pain. Tabitha’s ordeal began when she was 11 years old and dislocated her left knee while playing softball. Her knee continued to dislocate over the next 3 years and she had 3 surgeries to try to correct it. The pain continued and no one knew why. They thought that once her knee was working right that the pain would go away, but instead it increased and spread throughout both legs. She spent more time using crutches, canes, arm crutches, walkers, and a wheelchair than she did walking. For the past few years she has been unable to put any weight on her legs and has been confined to a wheelchair.

RSD has invaded Tabitha’s body, stealing her life away bit by bit. She has bravely tried so many things to get any amount of relief, including spinal nerve blocks, acupuncture, ultrasounds, chiropractic care, electronic stimulation, and too many medications to count. Most of her young adolescent life was spent in physical therapy, including an inpatient RSD program that lasted almost 6 months combining strenuous physical, occupational, aquatic, and music therapies for 8 hours everyday. She has had to relearn how to walk more times than her family can remember.

The pain quickly took over her entire body and she now throws up for weeks at a time, causing dehydration, and has seizures when the pain increases past her tolerance point. The nerves in her face and throat are affected by the RSD, which causes difficulty seeing, eating, swallowing, and speaking. She feels like she is being stabbed when anything, even something as soft as a blanket, touches her. This extreme skin sensitivity is one of the symptoms called allodynia. The RSD has also temporarily paralyzed her left side in the past and caused periods of short term blindness.

Tabitha loves animals and she is now unable to care for her pets, even spending time with them is hard for her. She can only sit up for short periods of time limiting what she can do. Her muscle spasms cause her to shake severely making it impossible to do things like drawing. Tabitha is a wonderful artist, she loves to make clothes and jewelry, but soon after she starts her hands begin to hurt so badly that they twist inward and she is unable to use them. This is heartbreaking for her.

Once her pain is gone, Tabitha hopes to walk and do all of the things she has been missing out on.

There is only ONE possible solution for Tabitha and one that needs to happen fast and one her family can not afford.

Ketamine is one of the most effective ways to treat RSD, but also one of the most controversial. In the beginning it was known for causing horrible hallucinations, along with other side effects, which has given it a bad reputation. Along the way they have made progress in their research with different combinations of drugs to counteract the side effects and the future of ketamine use looks promising. It is still a very experimental treatment and further research is needed. It may not be a cure yet but some have found relief where nothing else has helped. Those who suffer from RSD understand the risks and are willing to take a chance at gaining control over their pain.

The U.S. FDA has approved ketamine to be used as an anesthetic and the high dose coma has been okayed for up to 2 days. That is not enough time for the coma to be successful for the more severe cases of RSD, so people are traveling to Germany and more recently Mexico, where the ketamine coma is being allowed for 5-10 days, which researchers have found to be the most beneficial. Absolutely none of the expenses are covered by insurance.

Ketamine seems to be helping because it prevents the brain from processing pain signals. Dr. Schwartzman is the professor and chairman of Neurology at Drexel University Hospital and has been studying RSD for over 30 years. He has treated over 4,000 RSD patients, and is working closely with the doctors in Germany and Mexico, who do the coma treatments. He describes the ketamine coma as if you are unplugging and resetting a computer. By shutting the body down you are giving it time to reset the nerves, brain, and spinal chord, which interrupts the pain signals and hopefully will put everything back to normal. While not everyone comes out of the coma completely pain free, about 30-40% do, and all of the patients have had at least some relief. After completing the coma, patients receive booster treatments to keep the ketamine in their system.

I appeal to your heart and your generous spirit to help this beautiful young girl and others like her.

Reports

Please help me to help these children by making a donation of just $25 for each of the reports below - the money goes to The Terri Levine Foundation for Children with RSD and will go directly to helping these children. Thank you.